Tuesday, April 26, 2011

Camden is scheduled for surgery next Friday to have his nissen re done. (The nissen is the top of the stomach wrapped around the bottom of his esophagus- the one he has now is too tight) This will involve opening him up for the third time, throught the same scar. Food can not make it to his stomach so if he is going to eat by mouth one day, it seems to be our only option.

For my friends who want more details:We looked at his esophagram with Dr K today and it looks like a normal esophagus until right above the nissen it sort of "bells" out. That seems to be where food is hanging out and is getting stuck, and then not even making it through the nissen. This will be his third nissen related surgery. First one too loose, second is (obviously) too tight...( so this upcoming one should be juuuust right....?)I also had concerns about his Mini One button. It has seemed for a while now to look as if it was being pulled up inside him. Well, it popped out other day and the balloon looked crazy. The last one looked crazy but this was way worse. Most seem to think it is a bad balloon, but I dont know. Did i actually get 2 bad buttons that were ordered mths apart? Seems odd to me...but IDK.plus how it looks like it is being pulled is strange. It was actually FLATTER on the left side when it first fell out. We gave Barney gtube surgery and I took it out to take this picture. It was actually trying ot go back to a balloon shape here. Anyway Im not worrying about it since he is having surgery Friday.

* Testicles and closing trach hole are being put on the back burner, once again. It was nice for while to be able to think about tackling them, the "smaller" surgeries, but once again greater problems have arose.

I am not RUSHING his eating. I am not anxious to get that tube out. This kid used to dry heave at the sight of food or over things in his mouth, and now, 2 yrs later he is wanting and ASKING for food and I have to tell him no. I feel we are going to miss our window of opportunity. he is confused. I am worried about his poor esophagus and I am dreading this surgery. I just pray this is the 'fixer'....

Friday, April 8, 2011

Camden tried some very soft potatoes for dinner. Marcus had just got in from out of town and asked if food was staying down. Few minutes later, the gagging and choking began. All the kids stared, I cried, and my husband looked at me like, "I thought you just said things were staying down?" Im extremely bummed, but I knew that thing might not work out. So, it seems his whole last surgery was almost for nothing, but that is the CDH roller coaster. Im seriously trying not to dwell on it and move on to the next step.

On a good note, this kid is talking like crazy and probably has said 10 new words this week. He is amazing me everyday, and even tries the sounds when I correct him on words. He is also doing many two worded sentences like "baby pig" (for Olivia lol) and "hi, ____" He is also starting to copy us. He copied Micah saying, " no way!" It is so neat to see him sprout! Im really thinking we are the best speech therapists for him. ;o)

Thursday, April 7, 2011

Food is making it to stomach, and he hasn't choked it back up. This happened last time for a few weeks, then got bad again. So, I praying that this time it works. He has been snacking on things through out the day, not a lot of calories, but I give him a lot through the night. Just letting him experience hunger again and hoping he doesn't have another set back.

He is all pretty healed in the boy department. Still a bit bruised but the boy never complained. Never. I bathed him today, a day earlier than drs orders, but I couldnt take it anymore. When he woke up this morning with stomach contents everywhere ( med port on gtube fed the bed, again UGH) a bath was needed asap!

Friday, April 1, 2011

well, there goes my trying to kill 2 birds with one stone. First off, he was dilated, but Dr K says things are "tight". I shared with him that things have recently gotten worse this week too. We will discuss things at the end of this month. Is this working? Or does he need to be opened up AGAIN. I dread that, and I'm tired right now and don't want to think about that so I'll move on....

His testes didn't go so well either. Oh, Camden, my child....can things be "easy" with you? =p One was brought down and Dr K said it was tedious and he feels we should go back to Nemours and have our urologist do the surgery. Surgery took longer than I expected so I was antsy. Difficult thinking about him being intubated and now we have to do this all over again with his testicles, which by the way look so pitiful. Another surgery, with more bruised peepee. My poor baby.

But, he is fine. He got a little sick when I just tried to feed him, so I had to vent his gtube and let things out, but he is doing better. Just wanting him to heal up and we can think about this stuff in a few weeks. Tonight I am thanking God for my baby's lungs, good airways, and healthy heart. *Focusing-on-how-far-we-have-come*

About Me

Camden James joined our family on January 22, 2009, weighing approx 8-9 pounds and measuring around 22 inches with an UNKNOWN congenital diaphragmatic hernia. He joins his father, Marcus and I and three brothers and a sister.He has a trach and has been off ventilator since winter of 09. He gets all nutrition from a gtube.Life is not what it was, but we are adjusting to our new normal and trusting God as He continues to guide.... *Camden had his first "reherniation" diaphragm repair on Oct 30 2009, patched with gortex.* Some colon had made its way in chest cavity, behind his heart.*He was hospitalized due to his first sickness resulting from a cold(we think) for the first time on Jan 6 2010, at almost one year old.*REASONS FOR BLOGGING? Obviously to keep close friends and family updated but more importantly to help others with special needs children. Other blogs encourage me, give tips, and help me realize that I am not alone on this journey.I hope to do the same for them.*Camden was decannulated on June 2, 2010!!!*UPDATE for 2011 He finally took interest in eating, but it isnt possible due to his nissen surgery being too tight. New hurdle to overcome..